In honor of Autism Awareness Month, I’m sharing my story on what it’s like to grow up with undiagnosed autism.
I spent the first three decades of my life trying to flip a magic switch – for three decades I didn’t realize it was impossible
I used to daydream about meeting my future self. The time machine would be on limited fuel, and we had to be quick. Even as a five-year-old, I imagined our conversations would be productive and direct.
The first thing I always asked was, “Did you find out what’s wrong with me?”
I wanted to know why I didn’t fit in. What magic words did the other kids use to make friends? Why did kids at school single me out for bullying? Why did kids refuse to sit next to me at lunch? Why did people talk to children with a funny voice? Why did my mom, and later, teachers and co-workers suddenly start shouting at me? Why did no one come to my birthday party, and later, why I was the only one not invited to co-worker’s parties? Why have parties at all – wouldn’t it be more efficient to just tell our friends we like them and give them cash? Why is dating so indirect and silly? Why did people break rules and use words incorrectly? Why do clothes and hair matter so much, and how come we always have to wear pants and shirts? Why is everything so illogical?
As a young adult, it became less about daydreams and more about flipping that magic switch – the one that would make sense of all that vague, confusing social stuff. There was a postulate everyone knew but me – and once I figured it out, that switch would flip. I would win friends and have a successful career, and the world would make sense.
Convinced there was some key piece of information I was missing, I studied family sitcoms to learn what causes conflict and how to resolve it. Rewinding and fast-forwarding through re-runs, I learned what facial expresses went with what feelings, and how to express yourself with your whole body.
I started reading self-help books the moment I got my first library card. As a teen, I read parenting books to crack the baffling behavior of my peers. In my 20’s, it was etiquette books to figure out how to stop enraging my family.
Imagine how much my life changed when at the age of 12, I realized that people will be nice to you if you walk around smiling for no good reason (like a crazy person!) Why didn’t they teach us that in preschool?
To this day, I hear my facial expressions and movements are a bit exaggerated – probably because they are styled after Carl, the dad from Family Matters.
This was normal, right?
I couldn’t find a playmate at recess in elementary school, so I spent those afternoons looking up into the sky, willing a space saucer to land in the school courtyard.
I thought surely, every kid must have this daydream. (Just not during recess, obviously, since they had friends to play with.)
A walkway would unfurl from the saucer, and out would come a royal procession.
“Come, Your Highness, to your rightful place as Princess of the Moon!”
“We are terribly sorry, we had to leave you here for five years to teach you humility while the stinky earth children abused you, and now it is time for you to come home to the Moon. There, you will find everything is much quieter, the people speak directly and truthfully, and everything comes in soft shades of blue.”
I knew I had wrong planet syndrome – but didn’t everybody?
I’m still not 100% that this isn’t just common for everybody. While sure, I get a lot of feedback on my unusual (and yet delightful!) perspectives, isn’t everyone a little weird about something?
By ten years old, I theorized that the world was a painful, confusing place on purpose. Like bullies thinning the herd, people designed lights too bright and noises too loud to weed out the weak. My strength was the ability to accommodate, to work harder to get stuff done despite the pain.
Looking someone in the eye was a test to make sure you had tenacity and courage – because it sure is uncomfortable and terrifying! Not stimming in public is a sign that you are focused and in-control, and not stimming ever meant you were just an all-around amazing person who controlled your baser instincts.
I guess not
Turns out I was just autistic.
When I was twenty-nine years old, I discovered that not everyone finds wind chimes, fluorescent lights, and high-heels agonizingly painful. Not everyone learned how to read facial expressions from a book, or body language from a steadfast curriculum of TGIF. Not everyone thought school testing was to evaluate how to well you can answer questions under torture – from buzzing heat vents and lights, the overwhelming odor of the guy sitting next to you, while cramping your hand to make impossibly small letters and numbers in a straight line.
On the plus side, building up all that stamina and pain tolerance made childbirth a breeze. I’d take an hour of labor over gym class any day.
The switch was broken the entire time
All of that toughness, that control, and that hustle to keep up was just running on a treadmill next to people standing still. There was no finish line – there would be no ‘Ah-HA!’ moment when I’d flip that magic switch and live happily ever.
I was a little disappointed – sometimes I still am
I am still learning that many daily tasks are not excruciatingly difficult for regular people. Parties, grocery shopping, trips to the mall – turns out, these are things that do not usually require a 24-hour period of recovery. The agony of transitioning from sleep to sunlight and voices in the morning should not feel like being attacked, supposedly.
There is no switch to flip, where I can suddenly make this stuff easy. Sometimes it feels overwhelming – like I’m trying to climb a mountain on foot, and everyone else is driving a car and tossing litter out the window for me to jump over.
It’s going to stay difficult – always.
When I started telling people about my diagnosis – many didn’t believe me. That was frustrating. To work so hard to pass that it ends up backfiring. I wanted credit for all of this hard work, Dammit!
Mostly I was relieved – learning I am autistic allowed me to stop trying so hard
When I learned that the switch was un-flippable, I learned to be kinder to myself. I don’t attend loud, crowded, parties to prove I am a good friend. I forgive myself for my messy handwriting, my inability to catch a ball, and I wear ear muffs when things get too loud, instead of trying to tough it out.
Those close to me are kinder as well – my partner no longer insists on sleeping with a fan now that he understands it’s like sleeping with a swarm of locusts and a fire alarm. My mother has forgiven a lot of my childhood spills and hasn’t had an inexplicable outburst at me since she accepted my diagnosis.
Knowing the rules changes the game
In 2013, I created a Facebook post and ended it with a note that knowing I am autistic allows me to realize that there isn’t something fundamentally wrong with me and I’m not alone – in fact, there is nothing wrong with me at all. A friend (also on the spectrum) commented with something that I reflect on frequently:
“Without an understanding of why we fail in these ways we would spend our lives obsessively searching for a better strategy, without truly knowing the rules – because ours are going to always be slightly different. In knowing this I have finally come to terms with myself – I am so much easier on myself, and I could be brutal at times, which in turn lets me be much more forgiving for the people around me. It’s true this is just a label, but it also means so much more to me, it means I don’t need to fix anything anymore, and I can finally let go and love myself.” – Dave W.
My diagnosis freed me to concentrate on other things – to accept how I am and learn what I need to work around. Now I have the tools to avoid these obstacles.
In the last few years, while I accepted and explored my diagnosis, I learned to focus less on what I can’t do. Now I’m using my strengths – the gifts I was born with (like being a great photographer – WINK WINK), and more importantly, the stamina I built while I was running to keep up. Learning to survive on the wrong planet taught me how to hustle.
I’m no longer wasting my energy to find that switch – I’m using my super powers to change the world.
Just wait. You’ll see. It’s gonna be amaaaa-zing!
Read my public disclosure on autism and why I did it here.
Keep up with my adventures in do-goodery and autism awareness, join the Awesomesauce newsletter.